Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 228 days ago
Summary
DOI Name:
10.1136/bmjopen-2020-039583
Documentation
Associated Media:
Description:
Investment in the earliest stages of life is increasingly recognised to improve health across the life-course, beginning with the health of parents before pregnancy, in embryonic life, through to infancy, childhood, and into adulthood. eLIXIR BiSL combines information from routine maternity and neonatal health records and blood samples at two acute NHS Trust hospitals, along with mental health and primary care data. The study is able to address relationships between maternal and child physical health, and to investigate interactions with mental health. Participants are predominantly residents of South London, in areas with high levels of deprivation and ethnic diversity.
The BiSL data-linkage project uses opt-out consent to collect routine maternity and neonatal clinical patient data (GSTT and KCH NHS Trusts), mental health data from the SLaM CRIS platform, and primary care data from the LDN platform, for those registered with a GP in Lambeth. We hold the approval to also link with emergency and admissions data (HES), national fertility data (HFEA), and immunisation records (NIMS), as well as expanding primary care data to other boroughs in South London, namely: Southwark, Lewisham, and Bromley; the process to link these new data sources is currently ongoing.
At present, eLIXIR holds over 50,000 records. All records are deidentified, including masking of identifying information in open-text fields and use of pseudonymised identifiers. The data refresh process occurs every 6 months, and each update includes all retrospective data since conception of the cohort (October 2018), thus building a dynamic cohort.
The BiSL team includes members King’s College London Faculty of Life Sciences and Medicine and the Institute of Psychiatry, Psychology and Neurosciences (IoPPN), along with services users and patient representatives.
The eLIXIR Born in South London project has now been successfully awarded a MRC Longitudinal Population Study Grant which will enable us to operate for the next 5 years and continue building this dynamic mother-child database. BiSL is part of the MIREDA Study Partnership bringing together birth cohort data across the UK.
Coverage
Spatial:
United Kingdom,England; United Kingdom,England,London
Typical Age Range:
15-44
Follow Up:
Continuous
Pathway:
The dataset is an integrated care record covering the entire pregnancy pathway
starting from booking to delivery and 6 week postpartum.
Provenance
Origin
Collection Situations:
- Secondary care - In-patients
- Clinic
- Primary care - Clinic
- Services
- Community
Temporal
Accrual Periodicity:
Biannual
Distribution Release Date:
01 October 2018
Start Date:
01 January 2018
Time Lag:
More than 6 months
Accessibility
Access
Access Rights:
Access Service:
Researchers interested in using the BiSL data-linkage should complete the
application form. The application will be submitted to the eLIXIR BiSL Oversight
Committee which decides on the scientific merit of the study and reviews any
potential overlap with existing agreements. According to the study security
model, all BiSL data is held within a secure NHS firewall at SLaM, and no raw
data can be removed from it. Once approved, research users must be substantively
employed by a KHP Organisation (i.e. KCL, GSTT or KCH). in order to access data.
Those who are not, must obtain a SLaM Honorary Contract in order to access
eLIXIR data. Any external applicant must name a KHP member of staff as a ‘Local
Advisor’ in their Research Application Form. This may include PhD or MSc.
students at KCL, or other institutions. However, all students must be supervised
by a Principal Investigator employed by KHP or collaborating with a Local
Advisor as above. All researchers are required to complete an annual Infromation
Governance/GDPR training course before being able to access data. All research
outputs must acknowledge the significant contribution of all parties to creating
new value through data sharing. eLIXIR requests not for profit funding for
support of data linkage use. A tariff is calculated in a bespoke manner for each
project. Researchers do not need to have funding in place before data is made
available.
Access Request Cost:
To be requested
Delivery Lead Time:
Not applicable
Jurisdictions:
GB-ENG
Data Controller:
King"s College London King"s College Hospital NHS Foundation Trust Guy"s and St.
Thomas"s Hospital NHS Foundation Trust South London and Maudsley Hospital NHS
Foundation Trust Lambeth Data Net
Data Processor:
South London and Maudsley Hospital NHS Foundation Trust
Usage
Data Use Limitations:
- General research use
- Not for profit use
- Project-specific restrictions
Data Use Requirements:
- Project-specific restrictions
- Collaboration required
- Publication required
- Not for profit use
- Geographical restrictions
- Time limit on use
Resource Creators:
eLIXIR BiSL Partnership
Format and Standards
Vocabulary Encoding Schemes:
- LOCAL
- ICD10
- SNOMED CT
- SNOMED RT
Languages:
en
Formats:
- text/tab-separated-values
- text/csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Unique identifier pseudonym eLIXIR ID used to link together records
57639
Count
01 October 2018